A harrowing journey, a supporting community


To the Editor:

This letter is for the phenomenal Island community that continues to amaze and surprise us every day.

As some may know, our daughter, Lyla-James, was born on May 13, 2010, premature and with a critical heart defect that has required her to have five separate heart procedures and open heart surgery in July of 2012. We thought that 2013 would be a year free of hospitals and surgeries until in mid-January we noticed that suddenly Lyla was walking on her right foot tippy-toed and with her foot inverted. What made it so alarming was the rate at which it progressed and that it was getting worse at what seemed like hour by hour.

By the end of the week on Friday, I had called her pediatrician and she told me to come in that morning. When we arrived at the hospital, she called her neurologist in Boston, who wanted us there that day so they could perform a sedated MRI to see what might be causing her right leg not to function properly. They also expressed major concern about a brain hemorrhage Lyla had suffered in the left side of her brain when she was first born due to her going to into cardiac arrest for half an hour. We left MV Hospital and we were in Boston by 3:30.

We didn’t end up getting the MRI until the next day, and we waited for what seemed like forever for the results. We ended up learning that our daughter has something called a tethered spinal cord. Within a week we went from a healthy child, to a child with a form of spina bifida who would require back surgery by the end of the week.

As a parent who has already been put through the ringer, and seemingly come out the other side unscathed, this news was surreal. As a mother who carried and grew this child, this news was devastating. How could more be wrong with our daughter? She seemed so perfect.

Everything she was doing was right on the mark developmentally, and in our eyes, she was the most superior two and a half year old that ever walked the earth. But yet here we were again, navigating our way through hospital life, unexpected weeks of work missed for both David and me, and a recovery for Lyla-James when we returned home that to this day, remains a mystery.

While we awaited the January surgery, Children’s Hospital had called us to say that our insurance company hadn’t yet approved the surgery, and it wasn’t looking good. I spent the next 24 hours on the phone with both the hospital and our insurance company trying to figure out how and what was going on. What it came down to was that the hospital says it was the insurance company’s fault, and the insurance company says it was the hospital’s fault. We went home frustrated and defeated.

During this time, a dear friend of ours, Kristin Hall, set up a third party donation fund through You’ve Got A Friend on Martha’s Vineyard. She also arranged for a “Hot Yoga Benefit for Lyla-James” at Vineyard Yoga where she is an instructor and where both David and I practice. Since the surgery was cancelled, David and I were able to attend, and the turnout was overwhelming. People dropped off food, gifts, gift cards; people came and practiced, and people didn’t. There was no real way for us to thank everyone from that night, and we were so overwhelmed, so we thank you.

Lyla’s surgery had to be rescheduled, and with a new surgeon, so we headed back up to Boston the night before a snow storm, this time to meet with the head of the neurosurgery department. He told us that instead of her tethered spine causing her foot and leg to not function properly, it was from the brain hemorrhage she had suffered at birth. We decided to go ahead with the surgery in February and with a whole new pile of concerns on our hands about our daughter’s neurological issues.

While we were home in limbo, we continued getting the love and support that only the community of Martha’s Vineyard has to offer. People poured out of the woodwork, stopping us at the grocery store, in the street, and overwhelming my inbox on Facebook. Everyone had something to offer, whether it was someone to vent to, someone donating money to help us pay for groceries and utilities, or someone offering to take Lyla for a bit so David and I could see a movie. Another friend of ours, Kat McCourt, who was a guest editor for Martha’s Vineyard Patch, was kind enough to publish Lyla’s story with a link to her You’ve Got A Friend address. We’re not sure who donated, and we’ll never know. Thank you.

Then, lo and behold, blizzard Nemo came rolling into town. David and I had arranged the time off work, and Lyla from daycare at Community Services. I got the call at 10 am on February 7, telling me they would let me know by 1 pm if the surgery was to be cancelled. We all know how Nemo went, especially for Boston. Needless to say, we stayed put and enjoyed the snow. For the third time since January 17, the surgery was rescheduled. Our final, and hopefully last date, will be tomorrow, February 22.

Lyla-James and I will be leave on Thursday for her pre-op appointment, return to the Cape to pick David up at the boat so he can complete a day of work, then head back up to the Boston area and wait until her surgery. Lyla’s recovery from surgery will involve a five-day stay in the hospital, lightly sedated to keep her completely flat on her back so the fluid can form back around her spine. That, along with one of our most recent crowning achievements, Lyla beginning potty training, is slightly nerve wracking.

We’re remarkably fortunate in the fact that we have all of Lyla’s grandparents on Island who are eager to rotate turns in Boston to relieve David and me for a few hours to sleep/shower/eat. Because of her age, I will be sleeping in the room with Lyla every night until she is ready to go home, and David is relying on nearby friends for a place to stay.

We truly cannot stress enough how much every single well-wish, every single ounce of love, even that one time we might have crossed your mind, has meant to us. We truly do not know what we would have done without each and every one of you. We know that we still have a long and difficult road ahead of us, but we know that once again, our amazing Island community has come together for one of its own. We thank you from every fiber of our being for everything everyone has done for us.

Lyla-James Jones, David Jones, Raleigh Russell

West Tisbury